Member
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Join Date: Nov 2007
Location: manhattan, nyc
Posts: 272
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Member
Join Date: Nov 2007
Location: manhattan, nyc
Posts: 272
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How to explain myself to a new neuro
Two weeks ago I saw a well respected rheumy who says I do not have any autoimmune diseases (at least those which show up on blood tests & examination) which can explain my symptoms. He ruled out Celiac & FMS.
He also said that FMS would not present w/ severe leg weakness
Here are some of my major symptoms:
1) intense leg weakness requiring the use of a walker
1(a) intense leg pain from thighs to feet.
2) balance is off...a slight bump can knock me into counters, chairs, etc.
3) numb feet & calves
4) burning feet, esp. @ night
5) fatigue
6) depression...don't want to leave the house, lie around on couch most of day surfing the web
7) NO reflexes @ ankles, knees
8) dry eyes & nasal passages
9) back pain when standing more than 5-10 minutes
10)muscle stiffness & aches in legs, esp. in calves
As soon as I mention having had chemo 10 years ago, most neuros say "PN."
But whatever it is, it is worsening. I would like to have a new doc look at me without reaching the instant conclusion that I have PN. I tried Lyrica for about 7 weeks but although it helped with the stiffness, foot numbness & balance, I could not tolerate the s/e, especially the mucus membrane dryness. And, most importantly, it did not help the weakness & inability to walk unaided.
I had a laminectomy in 1974 for a herniated disk. I've had MRIs, EMGs, NCSs...
you name it. The last MRI, done about 4 years ago, showed some stenosis & "degenerative disk disease." But no doc ever concluded that the stenosis was bad enough to cause my sx. My own suspicion is that maybe the stenosis/disk stuff contributes a lot to my disability and that what's going on is not strictly PN.
I am asking for an MRI when I see the pain doc in a few weeks. Maybe there'll be some changes which will explain all these sx.
I also plan to see a new Neuro here in NYC before I make a trip to Johns Hopkins' neuro dept.
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